Chronicling the adventures of one amazing, funny, sweet, outrageous young lady, who happens to have CHARGE syndrome!

Wednesday, May 28, 2014

Kennedy's 2013-2014

This has become pretty drastic - over a year since I've last posted. I know with the ease of posting to Facebook that many blogs have gone by the wayside. It's also indicative of our busy lives and not making the time to write as much or as often as I'd once had. I still feel it's important to update though because so many folks are not on Facebook and there might be someone out there who follows us via the blog only so I just wanted to share a few photos of Kennedy and a little about how she's been doing.

Last summer we had an amazing trip to Arizona for the CHARGE Syndrome Conference. Last year, K decided not to attend the camp but to come to the information sessions. She sat with a big group of teens who were interested in learning more. She also did some volunteer work at the conference sales table. Along with a blast at conference meeting old friends and new, we had an unforgettable trip to Sedona and the Grand Canyon.

My beauty surrounded by the Grand Canyon

Volunteering at the CHARGE Conference

With her buddy Clare at the conference

Taking pics at the Grand Canyon

Poolside in Arizona

In the fall, it was back to school - she's now in grade 10 at HVHS and loves her school to pieces - a very proud Viking! This year she also has no educational assistant for the first time. She was ready. We were brave. She has done amazing in terms of making sure she is where she needs to be, has what she needs, and advocating for herself by asking the teachers or talking things out with us here at home. We are so incredibly proud of her giant leaps in independence.

She also received an academic achievement medal in the fall at an awards ceremony for attaining honors for the 2012-2013 school year.

Kennedy in Oliver! (front row, pink sweater on the right side)

This year saw her perform once again in the school's annual musical, which was Oliver! She once again worked extremely hard to manage all of her school work along with the intense rehearsal schedule. I feel she learns so much independence from going to practices, managing time, making sure everything is done, etc. It's such an important part of her schooling experience for so many reasons beyond the artistic outlet.

In October '13, we had a trip to Boston with her pal MacKenzie to see Selena Gomez - lots of fun and an amazing show!

Winter - fireside + homework = a typical night...

She continues to enjoy her role as Auntie, playing, reading and basically doing whatever the kids want, including being their personal jungle gym!

One other thing new this year has been that she joined the HVHS Chorale. She's been very faithful to practices and has enjoyed performing with the Chorale in public. Her next show is tomorrow night!

Kennedy, front row center

Kennedy, front row center just to the director's left

In March of 2014 we took a short trip to Halifax, NS for some girl time with Kennedy's BFF MacKenzie & her mom, Jeanie. It was a belated celebration for Kennedy's 16th birthday in January!
In April, Kennedy raised over $100 and participated in the Relay for Life at her school, an all-night event where they put the "fun" in fundraising for a great cause. Here she is in the photo booth with a couple of pals.

She also took music/band class this year and was thrilled to be a part of the percussion section. She performed just last night and, for a group of students who just began in January, they were amazing!

Band Blitz - May 2014! Kennedy, in back center on drums

We are closing in on summer now so lots of time for joyful jumping on the trampoline, lazy days at the trailer and lots of fun. Hopefully our next update will be much earlier than a year from now!

WELCOME!

Today is...

Team Kennedy CIFC

What is CHARGE Syndrome?

CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.

Continued research is needed to help us understand the medical and developmental challenges facing individuals with CHARGE. Better understanding will lead the way to interventions, therapies and educational strategies which can help people with CHARGE syndrome overcome many of the obstacles in their lives.

One of the hidden features of CHARGE syndrome is the determination and strong character these children display.